Povestea
Teodorei este una speciala si puțin diferită de a celorlalți
copii. Spun asta pentru ca de când era in pântecele meu, am simtiti că se
schimbă viata mea si prietenii sau oameni dragi mie si apropiati chiar
mi-au spus acest lucru.
Teodora s-a născut pe 5 noiembrie 2013, într-o noapte ce parcă a stat
in loc. Eu nu eram pregătită sa nasc atunci, colul era închis, dar
Teodora mea a vrut să vina pe lumea atunci, in noaptea de 4 spre 5
noiembrie.
Nu aveam bani, amanetasem verigheta mamei mele si pastrasem ceva din salariul
meu ( mai am 2 fetite si sunt responsabilitati mari și multe ), eram
obosita si fără speranță.
Am avut o sarcina fără mari probleme, însă nu a fost
ușoară deloc. Stresul mare, grijile, boala mea ( astm bronsic ),
nesiguranța zilei de mâine mă vlăguiseră. Chiar cazusem în
depresie si a simțit si Teodora asta.
Am născut -o repede, normal si cu dureri extrem de mari. Colul era aproape
închis, iar eu aveam contractii dese, puternice si criminale. La 9 seara m-am
internat, medicul de garda nu a vrut sa facă cezariană (si bine a
facut), la 10 jumătate au început contractiile si la 1.35 noaptea s-a
născut îngerașul Teodora Nectaria.
Când am văzut-o, imediat mi-am dat seama ca are o problemă, dar nu
stiam ce este, ce riscuri are, cum se numește, cum se tratează.
Nici doctorii nu stiau ce sa îmi spună si amutisera de tot si eu
imbatraneam cu fiecare minut, pentru ca nu știam cum sa fac sa o fac bine
si cum sa o liniștesc. A plâns toată noaptea aia lungă si grea
după mine si eu o auzeam si stiam ca vrea sa merg la ea, sa o apar si sa o
tin la pieptul meu.Au urmat ore grele si apăsătoare, îmi puneam tot
felul de întrebări, aveam numai gânduri urâte si deznădejde, eram
speriată si nimeni nu îmi spunea nimic. Doctorii nu sunt de condamnat,
cazurile la noi in tara fiind extrem de rare.
Am auzit presupuse diagnostice, de la melanom cutanat, neurofibromatoza si
sindrom Sturge-Webber, pana la malformatii ale pielii, sau Nev Congenital
Gigant, care este adevaratul ei diagnostic.
In urmatoarele zile am inceput sa caut singura pe internet informatii si oameni
care mi-ar putea salva copilul si am trimis mai multe mail-uri pe mai multe
site-uri cu boli de piele, inclusiv pe Nevus Outreach Org, o fundatie din
America. Acolo am gasit poze cu boala fetitei mele, la copii, diverse parti ale
corpului si m-am ingrozit. Acolo scria tot despre riscuri, complicatii,
tratament, cum evolueaza in timp si medicii care sunt cei mai buni in situatia
asta, unde fac cercetari si ce au descoperit referitor la aceasta boala.
Imediat, in cateva ore, mi-a raspuns o mamica, o femeie extraordinara si care are o fetita frumoasa, cu aceeasi problema ca si Teodora, decat ca fetita ei a avut doar un nev mare, la cap, care prin 4 operatii s-a rezolvat si acum este un copil perfect normal si dulce. Merilee, pentru ca acesta este numele ei, este si cadru medical intr-o clinica din Montana si mi-a scris despre aceasta boala, de care eu nici nu auzisem si eram ingrozita si suparata, frustrata si furioasa, pentru ca am dat vina pe mine, desi am aflat ulterior ca nu era vina mea. Stresul meu si problemele mele din timpul sarcinii au contribuit, insa nu au declansat aceasta boala. Merilee mi-a explicat ca in acel moment nu aveam nimic de facut decat sa ma rog la Dumnezeu si sa o iubesc pe Teodora cu toata fiinta mea, asa cum imi iubesc toate trei fetitele, Iulia, Ioana si Teodora, sa fiu optimista si sa cred cu toata puterea mea ca va fi bine si ca Teodora se va vindeca. Mi-a fost aproape imposibil sa fiu optimista, insa va rog sa ma credeti, am reusit sa lupt, sa caut solutii, sa merg oriunde cineva ma sfatuia ca am o sansa cu ea. Dumnezeu mi-a scos in cale oameni minunati, ingeri si am aflat tot ce se putea afla despre aceasta anomalie genetica. Exista riscuri, americanii spun ca sunt mici, dar ele exista si cu cat copilul are mai multi sateliti, pe langa nevul gigant, cu atat el trebuie investigat, observat si tratat mai in amanunt, mai repede si mai bine. Si impactul psihologic asupra copilului mai tarziu trebuie luat in calcul, riscul de a dezvolta complicatii deasemenea trebuie luate in calcul.
Deci la 5 zile de la nasterea Teodorei, am aflat ce boala avea si ce implica aceasta boala, cum se trateaza, unde se tratateaza si cel mai important, AVEAM O SANSA cu cel MAI BUN MEDIC DIN LUME! Dr Bruce S Bauer, de la clinica NorthShore Medical System - Division of pediatric plastic and reconstructive surgery, afiliate spitalelor Highland Memorial Hospital si Evanston Hospital, in Northbrook - Chicago, Illinois - are o experienta de peste 35 de ani in a trata ( chirurgical ) si vindeca, pe cat posibil, aceasta boala complicata de piele, care nu poate fi prevenita sau depistata in timpul sarcinii. El a reusit in acesti zeci de ani sa descopere tehnici de grefare a pielii, de reconstructie a scalpului si maxilo-faciala, a urechii si a membrelor, a reusit sa salveze zeci de mii de copii chinuiti de cancer din aceasta maladie, sa le dau o sansa la o viata normala si fericita, dar mai ales sanatoasa! Este un medic exceptional, genial si ma rog lui Dumnezeu sa il tina sanatos si sa salveze cat mai multi copii si suflete care sufera!
Asadar aveam o sansa pentru Teodora! Acum venea si intrebarea: Cum sa ajungem noi in America fara niciun ban, fara sa putem face un imprumut, in conditiile in care stateam intr-un apartament cu chirie si mai avem inca 2 copii?!? Cum??? Pe cat de "fericita" eram ca am gasit o salvare pentru Teodora, pe atat de disperata si frustrata eram, pentru ca nu aveam nicio solutie sa ma descurc singura! In maternitate, nasa mea cea mica ( fiica nasei mele de botez ) a fost prima persoana inafara sotului meu si a mamei mele, care a vrut sa o vada pe Teodora si nu am avut curaj sa ii spun cum s-a nascut... Si a vazut-o! Atunci ea mi-a spus asa: " Ai incredere in Dumnezeu, sa vezi, totul o sa fie bine! O sa fac si eu tot posibilul sa te ajut!" Si m-a ajutat, drept pentru care ii multumesc din suflet si ma rog la Dumnezeu sa o rasplateasca asa cum merita, sa fie sanatoasa si iubita, draga mea Eileen Georgiana!
Pe data de 8 noiembrie, de Sf Mihail si Gavriil, ne-au externat din maternitate si am ajuns acasa... Fetitele mele au fost si fericite si mirate de surioara lor si le-am explicat ca ea este un copil insemnat, asa cum un alt om minunat mi-a spus inca de cand eram insarcinata, zana Elena. Au urmat nopti in care eram mai mult moarta decat vie, nu puteam sa mai plang si ma rugam lui Dumnezeu sa imi dea o idee, sa imi arate calea pe care trebuie sa o iau. Si mi-a aratat! Intr-o zi, avea Teodora 10 zile, am postat o poza cu ea, asa cum era si verisoara mea ( acum si una din nasele ei ), Catalina, mi-a scris aici pe facebook si m-a intrebat ce are copilul si eu i-am spus. I-am spus ca am gasit unde sa mergem, dar ca nu am bani, ca nu stiu incotro sa o apuc si atunci ea mi-a spus sa ii fac pagina lui Teo aici, sa postez documentele medicale si sa ne apucam sa strangem bani pentru ea, sa plecam in America. Prietenii ei, Madalina Badea, Gianluca Dova si Luana Andreea Arsene au pus mana de la mana si umarul pentru spirjinul Teodorei. Intre timp, aflasem de la un bun prieten de-al fratelui meu, Cristian Petre, de un spital din Franta, unde el se afla si mi-a spus ca vorbeste acolo pentru Teodora, ca ar fi mai aproape si am putea accesa formularul E 112. Tot el a vorbit cu echipa nationala de rugby, pentru ca un meci jucat de ei, sa fie ca un eveniment caritabil pentru Teodora si pentru ca acesti bani sa ii revina ei. Dar nu aveam conturi...si nici nu puteam sa deschidem pe numele nostru, pentru ca avand datorii catre banci, pe care din neajunsuri nu le mai platisem, am fi pierdut banii stransi pentru Teodora si atunci trebuia sa gasim o solutie. Si am gasit-o! Matusa mea, Carmen Dobranici, a deschis pe numele ei conturile pentru donatii pentru Teodora si asa am putut posta conturile, ca oamenii sa poata dona. Am primit procura de imputernicit pe conturile Teodorei cu drepturi exclusive si depline, doar pentru donatii si de atunci mereu strangem bani pentru Teodora.
Am fost ajutati si de doua fundatii: Mereu Aproape si Ajuta copiii, cu o parte din banii pentru operatii, insa fundatia Mereu Aproape ne-a transmis ca nu ne mai pot ajuta si Ajuta copiii au spus ca vor mai face revenire la caz si ca daca eu gasesc sponsori printre firme, banci sau alti sponsori care vor sa faca donatiile printr-o fundatie, ei ne stau la dispozitie cu orice este in beneficiul Teodorei si a insanatosirii ei.
Am aplicat atunci si pentru formularul E 112, sa putem merge in Franta, la spitalul Necker din Paris, unde vorbise prietenul nostru Cristian Petre, insa datoriile statului roman catre Franta, pe cazuri medicale, este de peste 98 milioane de euro si cand am ajuns acolo ni l-au refuzat, apoi, dupa lungi insistente si mail-uri trimise de prietena mea, Sabina Valeanu Cranga, un om si un inger, pe care o iubesc enorm, au acceptat sa ne primeasca la o consultatie, dar platita cash. Astfel ca, cu cheltuiala pe biletele de avion pana in Franta si consultatia de acolo, am cheltuit 1500 euro, bani pe care ii puteam salva pentru operatie. Oricum cei din Franta nu ne-au dat sperante si nici nu ne-au mai anuntat daca o opereaza pe Teo sau nu, ea fiind prea micuta cand am ajuns noi la ei si ramasese sa ne intoarcem in aprilie, dupa ce o programau ei. Lunile au trecut, cu ajutorul unor oameni deosebiti si cu suflet mare, am reusit sa strangem aproape 18 000 euro, insa nu stiam exact cat ne vor costa operatiile, cate operatii vor fi si unde le vom face. Am scris la clinici din Olanda, Marea Britanie, Turcia, Italia, Spania, Austria, insa nimeni nu ne-a raspuns si nimeni nu ne spunea nimic.
Eram deprimata, nu stiam ce sa fac si unde sa merg, pentru ca din America nu mai primisem niciun semn, desi eu le-am trimis mail-uri peste mail-uri, sa imi spuna cat ne costa operatiile, cand le facem, cate vor fi, sa stiu ce le spun Fundatiilor, oamenilor si sa stiu ce trebuia sa mai fac si cati bani trebuia sa mai strang...
Intr-o zi, in martie, cand francezii imi raspunsesera ca nu pot sa se ocupe de cazul Teodorei si plangeam ca o disperata in casa, ma rugam la Dumnezeu sa nu ma lase si sa imi arate calea, sa imi spuna de ce se intampla asta. Am deschis calculatorul, sa ma uit in mail-uri. Si atunci am vazut un mail din America! Doamne!!! A fost un sentiment ce nu pot sa il descriu in cuvinte, eram ca in povestea aia " Un ochi plange si unul rade".. L-am citit si am inceput sa rad, apoi sa plang. Secretara Dr Bauer imi spunea ca ne programase la operatii in aprilie si apoi in iulie, respectiv pe 22 aprilie si 18 iulie, cat ne costa operatiile si in ce consta ele si ca asteapta confirmarea de la mine si sa ii spunem cand venim, sa ne poata rezerva si un loc unde sa ne cazam, la Ronald McDonald Charity House, un fel de hotel de caritate al firmei McDonalds, unde ei cazeaza copiii care nu au unde locui pe timpul tratamentelor in America sau in lume.
Ce puteam sa ii spun eu acelei secretare? Nu aveam toti banii si nu aveam nici viza de America, nu aveam biletele de avion si noi, intr-o luna trebuia sa fim acolo si sa rezolvam toate astea.... Cum credeti ca ma simteam?! Ca un caine turbat prins in lat si inchis in cusca... Nu stiam unde sa o apuc, unde sa mai merg sa cer mila oamenilor, unde sa ma rog! Nu stiam! Mi-am adus aminte ca Fundatia Mereu Aproape trebuia sa ne ajute cu o parte din banii pe care ii stranseserea pentru Teodora chiar in acea perioada si am fost la ei. I-am luat prin surprindere, protocolul fundatiei impunand o anumita perioada pentru sponsorizare, insa eu nu mai aveam timp deloc! M-am rugat din suflet sa ma ajute si m-au ajutat! Acum ne mai trebuia viza si biletele de avion... Dar cum sa facem cu viza, ca auzisem tot felul de variante: ca trebuie sa avem casa noastra, ca trebuie sa avem masina, sa avem cont in banca etc. Noi nu aveam nimic din toate astea, masina tocmai o vandusem, casa nu aveam, bani ai nostri nu aveam... Aveam donatiile si conturile Teodorei si inca doi copii, pe care am fost nevoiti si sa il las cu parintii mei si cu matusa mea, cat am fost plecati cu Teodora ( groaznic pentru mine, am murit de dorul lor si ele de dorul meu si a fost foarte foarte greu... S-au imbolnavit de dor si de lipsa mea! ).
Am fost si am platit taxele pentru ambasada si in aceeasi noapte am si aplicat pentru viza SUA. Ne-au programat peste 2 zile. Nu pot sa va descriu ce emotii aveam si ce era in sufletul meu, insa Dumnezeu m-a impins de la spate. Ne-am luat toate actele si documentele si am ajuns la interviu. Acolo nu am asteptat mult si ne-au chemat la ghiseu. Interviul nu a durat decat maxim 5 minute, timp in care eu am spus despre situatia noastra si a Teodorei, domnul de la ghiseu a vazut-o, m-a intrebat daca avem bani si mi-a spus asa: " She will be just fine! Everything will be ok! Don't you worry! I will have your passports now and in 3 days do to TNT service and get your visa for the USA visit. Good luck! " Imi venea sa il strang in brate, sa tip de fericire ca am reusit. Uitandu-ma la acel om, cu care am stat fata in fata ( am aflat ulterior ca era chiar consulul Ambasadei SUA la Bucuresti ), mi-a venit in minte imaginea Parintelui Arsenie Boca, cel care mi-a mai spus o data: " Nu iti fie teama! Eu sunt cu tine si te ajut! Ai incredere in Dumnezeu si in mine! Totul va fi bine, o sa vezi!" si mi-am dat seama ca Dumnezeu a mai facut o minune cu mine! Sincer, nu credeam ca avem vreo sansa sa luam viza, dar Teodora este un copil insemnat si Dumnezeu si Maica Domnului o iubeste si ne iubeste si pe noi, toti!
Eram foarte fericita! Am ajuns acasa, am facut rezervarile pentru biletele de avion si in zilele ce au urmat ma rugam la Dumnezeu sa fie bine, sa suporte Teodora anesteziile, operatiile si ma rugam ca fetele mele, Ioana si Iulia, care ramaneau acasa fara mine, sa reziste si sa fie curajoase, sa aiba incredere ca totul va fi bine! Mi-era frica de ce va urma...
Am ajuns in America in 19 aprilie, la ora 2.35 pm, ora Americii si eram atat de obosita si debusolata si nu cunoasteam pe nimeni, nu stiam unde sa ajungem, eram intr-o alta lume, departe de casa si de fetele mele, insa hotarata sa fac un pas mare spre vindecarea Teodorei! Cu ajutorul unor oameni minunati, acest lucru a fost si este posibil!!!
Am
ajuns tarziu la Ronald McDonald House, care este cam la 40-50 km de aeroportul
O'Hare din Chicago. Acolo ne-au intampinat cei din staff-ul lor, extraordinari
acei voluntari si acei oameni de acolo, ne-au dus in camera si ne-au asigurat
ca sunt alaturi de noi si orice problema avem sa le spunem.
Am dormit atunci vreo 16 ore,, ne-am trezit a doua zi la pranz, adormiti de la
6 seara... Eram franti. Si Teo a dormit tot atat!
A doua zi i-am intrebat unde este spitalul la care trebuia sa ajungem cu Teodora si am aflat ca e la vreo 70-80 km de unde eram noi, intr-un orasel din nord, numit Northbrook si ca trebuia sa ajungem acolo cu un taxi pt ca afara era foarte frig ( in aprilie era iarna ) si era departe. Ne-am descurcat. Tot Dumnezeu ne-a ajutat! Duminica ne-am odihnit din nou, pentru ca e greu pana te acomodezi cu fusul orar, apoi luni am plecat catre clinica NorthShore.
Acolo
l-am intalnit pe Dr Bauer in carne si oase, un om foarte relaxat, foarte
comunicativ si care a vrut sa se asigure ca totul este si va fi bine cu Teodora,
care ne-a explicat pe indelete procedurile si ce are de gand sa faca in ceea ce
o priveste pe bubulina mica. Asistentele lui, Susan si Miriam, doua doamne
foarte sociabile, dragute si haioase ne-au instruit bine cu privire la ce avem
de facut in timpul si in perioada imediat urmatoare dupa operatie, ne-au dat
toate cele necesare pentru a avea grija de Teodora din punct de vedere
medical.
Eu initial intelesesem ca trebuie sa o operam pe 2 mai, insa prima ei operatie
a fost pe 22 aprilie si ne-a luat ca din oala, nu eram pregatiti moral si
sufleteste, insa am mers inainte cu putere si incredere in Dumnezeu. Dumnezeu,
care ne-a mai trimis un inger, pe domnul Tiberiu, un suflet nobil si bun, care
ne-a dus la spital in dimineata operatiei si a fost atat de impresionat de
Teodora, incat a povestit acasa sotiei lui, doamna Gabriela, oameni minunati (
el inginer, ea profesoara de engleza/franceza ) si care din acel moment au fost
tot timpul langa noi, timp de 3 luni jumatate. Datorita lor am cunoscut multi
romani la Chicago, am ajuns sa ne facem prieteni acolo, sa fim ajutati si luati
sub aripa ocrotitoare a Parintelui George si a doamnei Preotese Ramona de la
Biserica Sfanta Maria din Chicago, sa ne indrume, sa ne sfatuiasca si sa fie
alaturi de noi pentru Teodora, sa faca eveniment caritabil pentru Teodora, sa
il cunoastem pe Dl Steven Bonica de la Romanian Tribune - cel mai amre ziar
romanesc din Chicago, sa cunoastem doamne nobile ca doamna Daniela Duta, Oana
Broussard, doamna Preoteasa Loredana si doamna Preoteasa Izbasa, doamna
Loredana Savu si Alina Young, Nicole Luca si multi multi oameni si sufletele
extraordinare care ne-au ajutat si au fost langa noi in toate acele luni, cat
am stat acolo.
Tot in America va trebui sa facem si RMN-ul Teodorei, ca sa vedem exact cum sa prezinta din punct de vedere cerebral, neurologic si sa fim siguri ca ea nu este afectata si pe interior ( unul dintre riscuri ). Acest RMN costa in jur de 10280 dolari, se face la spitalul Evanston din Chicago si este facut tot sub anestezie, deci trebuie sa ne rugam sa fie bine in fiecare moment! Nu va fi usor, insa ma rog la Dumnezeu sa imi dea putere si sa le ocroteasca pe fetitele mele: pe Teodora, pe Ioana si pe Iulia si pe toti copiii din lumea asta, pentru ca au nevoie!
Costul fiecarei operatii difera in functie de procedura, de starea Teodorei si este stabilit de Dr Bauer impreuna cu echipa lui, pe masura ce avanseaza cu interventiile chirurgicale, care se vor termina atunci cand Teodora va avea undeva la 5-6 ani, poate dura si mai mult, pentru ca atunci se va reconstrui si urechea si Dr Bauer a spus ca e varsta optima.
Primele operatii ne-au costat 12400$ si a doua operatie 17890$, care au fost in aprilie si iulie. Operatia din decembrie, a treia operatie, va costa 13500$, la care se adauga drumul pana acolo si inapoi, care costa si el undeva la 3000$, fiind luna decembrie si preturile sunt mai mari.
Avem nevoie de ajutor si orice informatie, document sau act medical, va stau la dispozitie oricand si il pot trimite pe mail fara niciun fel de problema!
Fiti alaturi de noi in calatoria Teodorei spre vindecare si o lume fericita si sanatoasa! Cu Dumnezeu inainte!
Va multumesc din suflet si va doresc tot binele din lume, sa fiti sanatosi si feriti de astfel de experiente!
Va rugam nu ramaneti indiferenti si ajutati un ingeras sa se vindece si sa fie fericit, sa aiba o viata normala! Dati-i o sansa la viata!
Puteti dona via PayPal in contul ei: viata.pentruteo@gmail.com sau in contul ei de la JP Morgan Chase Bank Account is Routing number 071000013 si Account number 610382553. "For benefit of Teodora Serbanescu", ca mentiune. Titular cont este mama ei: Georgiana Serbanescu.
Datele noastre de contact :
Georgiana Serbanescu: mama Teodorei: 0745379858 si 0760876998.
Va multumim!
Doamne ajuta!
Cu drag,
Pagina pe care ne ajuta cineva sa o actualizam, unde sunt si actele medicale ale Teodorei:
Articole in care a aparut cazul Teodorei si actiuni care s-au facut:
http://frr.ro/2013/11/15/stejarii-sunt-alaturi-de-teodora/
http://allevents.in/Otopeni/conferinta-dan-puric-din-suflet-pentru-teodora/723349407727937#
http://www.libertatea.ro/detalii/articol/teodora-operata-sua-486844.html
http://www.libertatea.ro/detalii/articol/dan-puric-spectacol-pentru-teodora-492268.html
http://fundatiamereuaproape.ro/teodora-serbanescu-are-3-saptamani-si-s-a-nascut-cu-o-boala-congenitala-extreme-de-grava/
Paginile pe care le-am facut pe facebook:
https://www.facebook.com/pages/VIATA-pentru-TEO/225588610951463
https://www.facebook.com/life4teo
https://www.facebook.com/geo.joy.71?fref=ts
Below you can read my friend Georgiana Serbanescu's journey. It's a long story and I assume a lot of you can't find the time to read it all. But I chose to post in on my wall because it made me cry and also made me realize what unbelievable resources a mother is capable of! You, mothers, are incredible creatures! Teodora, Georgina's youngest daughter, is scheduled for her third surgery in the United States in December (which wasn't easy, coming from Romania). For that, she needs to raise $30,000. Sadly, she has only been able to raise $244 so far. If you can help at all, even a tiny bit, then please go to this site - (http://www.youcaring.com/…/help-4-theo…/208792/update/235261). If it's taking too much of your time or you're worried about the extra fees to send the money into her account, I (Ana-Maria Catone) can meet up with you and take any form of payment (cash, cheque, etc.) and deposit it to Georgiana's account. Did I mention it's November already? And she's scheduled for December?? And that Teodora's 1st birthday is in 3 days? Thank you for reading. Please donate, share and pray. It's definitely needed.
Greetings.
First of all I want to tell you how very impressed I am by your gestures, your
solidarity and the kindness you have all shown!
Teodora’s story is a special one and a little different from the other
children. I am saying this because ever since she was in my tummy I felt
something is changing in my life and my close friends actually told me that
too.
Teodora was born on in the night of November 5, 2013. I wasn’t ready to give
birth, my cervix was mostly closed but my Teoroda wanted to come into the world
in that night between the 4th and 5th of November.
I didn’t have much money so I pawned my mom’s wedding ring and I still had som
money left from my paycheck. (I have two other daughters and a lot of major
responsibilities). I was tired and without hope.
I had a pregnancy without any major problems but it wasn’t easy at all. The
stress, the worries, my illness (asthma) and being unsure what tomorrow would
bring left me drained. I was depressed and Teodora felt that.
I gave birth fast, normal and with extreme pain. My cervix was almost closed
and the contractions were coming fast and were very powerful. I went to the
hospital at 9 pm and the doctor on call didn’t want to perform a caesarian (and
very good that he didn’t), and at 10:30 the contractions started and at 1:35
am, my angel Teodora Nectaria was born.
The minute I saw her I knew she had a problem but I didn’t know what it was,
the implications, what it was called or how to treat it. The doctors went
silent, didn’t know what to tell me and I was felt that I growing older with
every minute because I didn’t know how to help her and comfort her. She cried
all that long night for me and I could hear her, I knew she wanted me to go to
her, to protect her and keep her in my arms. After many long hours of
questioning myself, overwhelmed by negative thoughts and without hope, I was
left scared and with nobody telling me anything. I can’t blame the doctors;
cases like this are very rare in our country. I heard a lot of diagnostics,
from Cutaneous Neurofibromatosis and Sturge-Webber syndrome to skin
malformations or Giant Congenital Nevusus, which turned out to be her real
diagnosis.
The next few days I start looking online for information and people that could
help save my child. I have sent many emails on different skin diseases,
including Nevus Outreach Org, a foundation from the States. This is where I
found pictures with children who had the same illness as my daughter, on
different parts of the body, and I was terrified. I found a lot of details
about the risk, complications, treatment, the evolution in time and the best
doctors that can assist, where they’re doing research and what they discovered
regarding this illness.
In a few hours I got an email from another mother, an exceptional woman, with a
beautiful daughter who has the same illness as my Teodora. Her daughter had
only one big Nevus on her head and with the help of the doctors and 4 surgeries
everything was normal for her and her sweet child.
Her name is Merilee and she was was also working in a clinic in Montana. She
wrote to me about this illness that I have never heard about, which was
stressing and terrifying me, leaving me frustrated and furious because I was
blaming myself although I found out afterward that it had nothing to do with
me. My stress and my problems during pregnancy might have contributed but they
didn’t provoke this illness. Merilee explained to me that there was nothing I
could have done in that moment except pray and love Teodora with all my being,
just as I love my all three daughters, Iulia, Ioana and Teodora. I was told to
be optimistic and to believe with all my power that Teodora will heal and be
well. It was almost impossible to be optimistic and to believe that Teodora
would heal and be well but I managed to fight, look for solutions and go
everywhere that I was advised that I might have a chance with her. God helped
me and along the way I met wonderful people, angels and I was able to find out
everything you could possibly find out about this genetic anomaly. There are
risks, the doctors from the States are calling them small risks but they do
exist. And I learned that the more “satellites” the giant Nevus has, the more
it has to be investigated, supervised and treated. And the psychological impact
on the child later on in life has to be taken into account and the risk of
developing complications.
So 5 days after Teodora's birth, I found out what the disease was, how to treat
it, where to treat it and most importantly, I had a chance with the best doctor
in the world! Dr. Bruce S Bauer, from the North Shore Medical System clinic –
Division of pediatric plastic and reconstructive surgery, affiliated with
Highland Memorial Hospital and Evanston Hospital, in Northbrook - Chicago,
Illinois – has over 35 years of experience in treating (and healing as much as
possible) this complicated skin illness which cannot be prevented or detected
during pregnancy.
He succeeded during his decades of research in discovering skin grafting
techniques, how to perform a reconstruction of the scalp and maxillofacial, ear
and limbs, and has managed to save tens of thousands of children afflicted by
cancer and give them a chance at a normal, happy but most important a healthy
life! He is an exceptional doctor who is brilliant and I pray God to keep him
healthy and to save as many children and suffering souls as possible!
So I had a chance for Teodora! Now the big question: How can we get to America
without any money, without being able to get a loan?!? How??? As happy as I was
that we found a way to rescue Teodora, all I could feel was desperation and
frustration because I had no solution or way to do it alone!
In the hospital, my youngest daughter’s godmother was the first person besides
my husband and my mother who wanted to see Teodora and I didn’t have the
courage to tell her how she was born.
And she saw her! Then she told me this: "Trust in God, you’ll see,
everything will be fine! I'll do my best to help you!" And she helped me,
for which I thank her with all my heart!
On November 8th we were discharged from the hospital and came home. My girls
were happy and amazed by their little sister. The following nights I was more
dead than alive, I could not cry and I was praying to God to give me an idea,
to show me the path that I have to take. And God showed me!
One day, when Teodora was 10 days old, I posted a picture of her on Facebook. I
got a response and I told her that I found where to go but we had not money nor
do I know where to begin with; then she told me to make Teo's Facebook page, to
post the medical records and to start collecting money for her to go to
America.
Her friends, Madalina Badea, Gianluca Dova and Luana Andreea Arsene put hand to
hand and shoulder to shoulder to help support Teodora. Meanwhile, I found out
from a good friend of my brother, Cristian Petre, about a hospital in France
where he was living at the time and he offered to go and talk about Teodora’s
case. This way it would be closer and we could access the form E 112.
He also talked to the national rugby team, to create a charitable event and the
money raised from one of their game that they played to be donated for Teodora.
But I had no bank accounts. Nor could I open one on her behalf because of the
debts we had to the banks. If we opened one they would have taken everything
and all the money raised for Teodora would be lost so we had to find a
solution.
And I found it! My aunt, Carmen Dobranici opened accounts for donations for
Teodora in her name and I was able to post the accounts so that people can donate.
I have power by attorney for the accounts with exclusive rights in full (it is
just for donations) and since then we’ve always raised money for Teodora.
I was helped by two foundations: “Mereu aproape”(“Always close”) and “Ajuta
copiii”(“Help the children”) with some of the money needed for the surgeries,
but the foundation “Mereu aproape” told us that they cannot help us right now
(probably they will in the future) and Ajuta copiii”(“Help the children”)
foundation said they will come back to the case and that if I find sponsors
among firms, banks and others who will make donations through a foundation,
they are at our disposal with anything they can help for the well being and
fast recovery of Teodora.
After this, we applied for E 112 form so we could go to France, to Necker
Hospital in Paris, who our friend Cristian Petre had spoken to, but the
Romanian state debt towards France (regarding medical cases) is over 98 million
euro and when I got there they refused the case. After long and persistent emails
sent by my friend Sabina Valeanu Cranga, a wonderful person and an angel who I
love dearly, they accepted to see us to for a consultation, but we had to pay
cash.
Therefore, the money spent on the plane ticket to France and the consultation
came to a total of 1,500 euro, which we could have used for the surgery. The
doctors from France didn’t give us hope, didn’t tell us if they would perform a
surgery or not, stating she was too young. We were supposed to come back in
April, when they said they will make an appointment for her.
Months passed by and with the help of a lot of special people with big hearts,
we managed to collect almost 18,000 euros, but we did not know exactly how much
the cost of surgeries would be, how many surgeries there would be and where
they would be performed. I wrote to clinics in the Netherlands, Britain,
Turkey, Italy, Spain, Austria, but no one answered and no one was saying
anything to us.
I was depressed, I did not know what to do and where to go. I had no news from
the States, despite the fact that I have sent them multiple emails asking them
to tell me how much the surgeries will cost us, when can they be performed, how
many would there be, etc. I wanted to know if I could inform the foundations
and also to let people know how much money I still had to collect .
One day in March, I received news from France, that they cannot deal with
Teodora’s case. I was crying desperately in the house and I praying to God to
not leave me and to show me the way and give me an answer! Why this is all
happening? I opened my computer to check my emails. And then I saw an email
from America!
It
was a feeling that words cannot describe. It was just like in the story “one
eye is crying and one is laughing”. I read it and I started laughing then crying.
Dr. Bauer’s secretary was letting me know she scheduled us for two surgeries,
one on the 22sd of April and one on July 18th. The price of the surgeries and
what's involved, and that shes waiting for my confirmation. She wanted to know
when we can arrive so she can reserve a place at Ronald McDonald Charity House,
a charity place belonging to the McDonald's company, where children from other
countries can stay while they are receiving treatments in the US.
What could I have replied to the secretary? I didn’t have all the money and I
had no visa for America, I had no plane tickets. We had to be solve all this
and we had to be there in a month. How do you think I felt?! Like a rabid dog
caught and caged. I did not know where to go, where else to ask for people’s
mercy, where to pray! I did not know!
I remembered that the foundation “Mereu aproape” (“Always close”) was suppose
to help us with some money that they’d raised on Teodora’s behalf and I went
straight to them.
I took them by surprise, the foundations rules imposing a certain time period
for a sponsorship but I had no time to lose! I begged them to help me and they
did! Now all we need are plane tickets.
But who is going to give me a visa for the States? I heard all kind of stories
– that you have to have your own house, you have to have a car, bank accounts,
etc. We had none of this, we just sold the car, we had no house, no money. We
had the donations and Teoroda’s bank accounts and another two children that I
had to leave with my parents and my aunt while we were away with Teodora (it
was horrible for me, I missed them so much and they missed me too, it was so
very hard. They got sick because of missing me).
We went to pay the taxes for the embassy and the same night we applied for a
visa for the USA. They scheduled us in 2 days. I can’t even explain how nervous
I was and what was going on in my soul but God pushed me from behind. They took
all our documents and we arrived for the interview. After a short wait, they
called us in. The interview was no longer than 5 minutes, the time that it took
me to explain Teodora’s case. The man looked at her, asked me if I had the
money and afterward said: “" She will be just fine! Everything will be OK!
Don't you worry! I will have your passports now and in 3 days do the TNT
service and get your visa for the USA visit. Good luck! "
I wanted to hug him and scream with happiness. Looking at the man that I stood
face to face with (who I found out later was the USA's consul in Bucharest),
his face reminded me of the priest Arsenie Boca, who told me one time: “Don’t
be afraid! I am here with you and I will help you! Trust in God and in myself.
Everything will be fine, you’ll see!”. And then I realized God made another
miracle happen! Honestly, I didn’t think we had a chance to obtain the visa,
but Teodora is a marked (??) child and God and Mother of God loves us all!
I was ecstatic! I got home, made the plane reservation and for the next few
day’s all I did was pray for Teodora to be able to handle the anesthesia and the
surgeries. I prayed that my daughters, Ioana and Iulia, who were to remain at
home without me, to persist and be brave, to trust that everything will be
fine! I was afraid of what was going to happen.
We arrived in America on April 19th at 2:35 pm. I was so tired and confused, I
didn’t know anyone or where to go, we were in a different world, far away from
our home and my girls but very determined to make a big step towards Teodora’s
healing! With the help from some wonderful people, this was and is possible!
We arrived late at Ronald McDonald House, which was located about 40-50 km from
O’Hare airport in Chicago. The staff was waiting for us with some amazing
volunteers; they showed us the room and reassured us that they are behind us
and to let them know about whatever problems we might encounter.
We slept about 16 hours. We woke up the next day at noon, sleeping since 6 pm
the prior evening. We were exhausted. Teo slept as much as we did too! The next
day we asked about the hospital where we had to go with Teodora, which was
located about 70-80 km distance from where we were, somewhere in Nord, in a
city called Northbrook. We had to take a cab because the outside weather was
very cold (in April it was still winter) and it was also very far. We made it. Again,
God helped us! Sunday we just rested and Monday we left towards the NorthShore
clinic.
This is where we met Dr. Bauer, a very relaxed man, very communicative, who
wanted to make sure everything would be fine with Teodora. He explained us in
detail all the procedures and the steps he’s going to take regarding my baby
girl. His assistants, Susan and Miriam - two very social ladies, very fun and
nice, instructed us regarding what needed to be done during and after the
surgery. They told us everything we needed to know to be able to take care of
Teodora from a medical point of view.
Initially, I understood that the surgery would be May 2nd , but her first
surgery was on April 22nd and took us by surprise, I was not prepared. morally
or spiritually, but we went ahead with strength and trust in God.
God has sent us another angel, Mr. Tiberiu, a noble and gentle heart, who took
us to the hospital the morning of the surgery and being impressed with
Teodora’s story, he shared it with his wife, Mrs. Gabriela. Truly two wonderful
people (he is an engineer, she is an English / French teacher). From that
moment on they were always beside us for the three and a half months we were
there. Thanks to them I met many Romanians in Chicago (we made many friends
there), and we’ve been taken under the protective wing of Father George and
Mrs. Ramona Priestess from the Church of Saint Mary of Chicago, who guided us,
advised us and joinede us to create a charity event for Theodora. We met Mr.
Steven Bonica from the Romanian Tribune - the biggest Romanian newspaper in
Chicago and noble ladies such as Mrs. Daniela Duta, Oana Broussard, Ms.
Loredana Priestess and Ms. Priestess Izbasa, Ms. Loredana Savu and Alina Young,
Nicole Luca and many other extraordinary people and souls that helped us and
were beside us in all those months that I sat there.
At one point we will have to perform an MRI, available in the States, to see
exactly how she is in terms of neurological and cerebral condition, and to make
sure nothing had been damaged in her interior (one of the risks). The MRI costs
around $10,280.00 It is performed at Evanston Hospital in Chicago. It has to be
done under anesthesia, so we must pray to be good every moment! It will not be
easy, but I pray to God to give me strength and to protect my girls: Teodora,
Ioana, Iulia and all the children in this world, because they need it!
The cost of each surgery is different, depending on the procedure and Teodora's
condition. It is established by Dr. Bauer and his team. Chirurgical interventions
might end when Teodora will be 5 or 6 years of age, maybe older, considering
her ear has to be rebuilt and Dr. Bauer said 5 or 6 years of age is the best
age.
The first two surgeries cost us $12,400 and $17,890 and they were performed in
April and July. The third surgery, which will take place in December, will cost
$13,500 plus the travel expenses. This will add up to $3,000 considering
December is a more expensive month.
We need help! Our information and medical reports are available anytime and I
can send it via email upon request.
Join us in Teodora's journey towards healing and a healthy and happy world!
With God ahead!
Thank you very much and I wish you all the best, to be healthy and safe from
such experiences as we have had!
God bless!
Love,
Georgiana